A big thank you to Lynne for letting me share one of her entries on her own blog. Lynne has had PIC for a number of years. Here she shares her journey and how sight loss lead her to develop Charles Bonnet Syndrome...
Let’s go back a few years… I had some health hassles that meant I needed to take steroids, one side effect of which was my eyesight, which was myopic at best, was getting distorted meaning my specs were not as effective as they usually were in correcting my view of the world. Well once my eyes had settled down after I’d been weaned off the latest round of steroids they didn’t readjust… so I booked a sight test ( beginning of June 2016) expecting to be told I would need new specs. However I was referred to the hospital… I knew it couldn’t be urgent as my appointment was for almost four months later so I just got on with my life.
End of September 2016 I rock up to my local hospital the only dread is (since I’d been sent twice in the past and been told that I had retinas like the surface of the moon due to scarring from childhood eye infections) was being told off by the doctor for wasting NHS money on something they’d checked before. Well that didn’t happen… instead I was told I had something that sounded like “blah blah blah… gobbledygook… blind… blah blah blah… gobbledygook… injections into your eye… blah blah blah” and was sent home to await an appointment letter for injections in my eyes… WHAT!!
Life continued… looking after my grandson while my daughter worked, walking my dog, hospital appointments for my other health hassles… no letter yet with the eye appointment… well it was nearly four months last time… meanwhile I have Christmas to prepare for… and finally into the new year… I pick up a letter and phone the number on it to ask when the appointment will be… “oh we’ll send it straight out”… two weeks later (end of January 2017) I pick up a different letter and phone a different number and am told (on the Friday) “come on Monday to our emergency clinic”… and there I was told I should have had that eyeball injection within the week of being told about it and it was too late that the damage was now irreparable. Beginning of March 9 months to the day after my opticians appointment for my sight test I was registered partially sighted (& end of October 2017 I was registered blind).
So what has that got to do with dinosaurs? Alongside losing my sight I gained a condition called Charles Bonnet Syndrome which simply put is my brain being deprived of visual stimuli is inventing it’s own version of the world around me… a person who blends into the background when standing still on moving becomes the velociraptor coming out of the bushes in that scene in Jurassic Park… a blur walking towards me is a person walking a Westie (West Highland Terrier), which morphs into a person walking two white chihuahuas, which (as it passes me and I look down to make sure I don’t get tangled in the leads) morphs into a person wearing white trainers.
So what can I see [on a day-to-day basis]?
This collage gives a hint to what I see. My colour perception is pretty good my right eye is as fuzzy as the bottom left image my left eye is pretty much like the bottom right image.
As you can see my new “normal” is very different. My last pair of prescription specs meant I could see sharp focus about six inches from my nose (without them that distance was four inches), however I couldn’t stand up straight at my kitchen counter and spread peanut butter on toast and see if I was spreading it evenly. The soft focus I grew up with started much closer. I can still hear the sadness in the voice of the optician who told me that she couldn’t give me stronger lenses to improve my vision. And her agreement that my specs were now more of a danger to me than a help as I described the dizziness, nausea, and headaches I suffered wearing them, so I’d started wearing them only when seated, or standing still. It was about a week later I was registered sight impaired (partially sighted) as at the hospital I was told I had to use my specs even though they had a permanent place at the bottom of my hand bag and were only used once or twice (at eye tests and appointments) since my diagnosis. (Seven and a half months later… having thrown the specs away I was registered severely sight impaired (blind) but that leads to another blog post).
As a woman who has lived a full and interesting life I wanted to stay as independent as possible… so I had to learn new skills and how to adapt those I already had… and strangely enough the fact I stopped straining to look at things through specs that really weren’t doing their job was the biggest step towards regaining my independence. But that really is another blog post
This blog is to give you an insight in how life doesn’t stop with sight loss, and how it can be just as fulfilling as it’s always been.
Please take look at Lynne's personal blog by following this link: